Growing up with pulmonary hypertension and congenital heart disease was sometimes lonely, because there wasn't anyone around me who felt the same way I did physically. No one had to stay out of gym because they got too tired and too short of breath like I did on a constant basis. No one had to wear a holter monitor like the one time I had to in 4th grade. Talk about trying to play mum ball in class, all you could hear was the monitor thing making noise. Although I could always go to sports games, I wasn't able to participate in any type of sport, because again, it was just physically way too much for my body to handle. I didn't really regret any of this. I thought it was just me and my normal. I thought I was the only person out there who really dealt with this kind of thing, but that was ok. I graduated high school, and started college. I worked, went to classes, and in the last year of college, started going out a lot more. I graduated with my education degree, and began ...
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I really enjoyed your webpage blog. I haven't read everything there, but you really made me feel better. I have been wearing oxygen during nights for the last 2 years. Finally, after four sleep studies, it looks as if I will soon be getting a ViPaP machine. That will also be connected to my oxygen. As of a month ago, I now have to wear the oxygen 24/7, as well. It is so hard for me; and it helps so much to see that others, also, have fought with this mentally (and I hate to think of it as vain) feeling. It makes me feel so sad.
Yesterday, at my Doctor’s office, a woman my age (55) actually got up (after looking at me pointedly) and moved away. I bothered her; that is, the oxygen or the need for the oxygen bothered her. I am treated so much different when I wear/don’t wear the oxygen. It is like night and day.
My Mom says, “Wanda, you always think people are looking at you.” I had to think on that one, because actually it turns out that her words are true. Ever since I was a child, I hated to be stared at; really hated it. It made me feel sort of naked, for some reason. Good thing I was never a model or actress (snicker) … as if. Anyway, I was scrounging the internet looking for a nicer looking cannula (dreaming) and stumbled upon your page.
Thanks so much for being there. I read your diagnosis, and called my husband quickly to see if such could be my issue. My problem is from MS or *supposed* MS. I do wish I could fast forward several years to the point where I don’t care if my husband’s friends see me with oxygen on. He is a professor at a local university, and … I am cringing when they will first see me with this dreaded tube hanging down my face. I will read on your blog some more, and read the other people’s comments. Again, thanks for having started this. My best to you and yours,
Wanda
Welcome to my blog! I was touched by your comments. I know how hard it is to be out in public with something that no one understands, like the oxygen. But really, it is just plastic. You are the same person whether you have a tube up your nose or not! And if someone else gives you a look, or turns to walk a different way, well that is their problem, not yours!
Thanks for leaving a comment. I am happy to hear how some people find my blog, because I don't know how some readers come across it! I'm glad it's helped you, and I hope you'll stick around. :)
Take care,
Colleen :)